Having had cold agglutinin disease (CAD) for more than a year and a half now, it has been nothing more than a nuisance. I am a primary CAD patient and my hemoglobin (HGB) hovers above 10, what I refer to as the safe zone. Since I have been in the safe zone, I am not in need of treatment; it’s more like symptom management. This management is daunting, a never-ending cycle of maintenance.
My entire life has drastically changed to accommodate the avoidance of triggers. So, I follow all the necessary steps to stay healthy by keeping up with a regimen of warm drinks and food and avoiding cold temperatures. It is the other variables that force me to alter my behavior daily, and some are so difficult to manage.
I have mentioned in the past that I tend to dehydrate easily; my heart will just start to beat so hard I wonder if I will be alright, and stomach issues come and go without explanation.
It is at these moments that I want to call my hematologist and say, “let’s do it, get approval.” Then the symptoms subside, and I am back to “no, I am good,” I do not want to put these drugs in my body. A holistic approach is not necessarily something I would run to, but pharmaceuticals are a gamble as well. All of them, and I mean every single one of them, come with a lengthy list of side effects from annoyances to deadly.
It is because of this that I keep holding off. When my hematologist first told me I had CAD, he immediately went into treatment mode and made his suggestions. At the time, my HGB was somewhere in the 9-range and at that time there was only a single option for treating CAD. In this short year and a half, another option has presented itself and there are still more in trials that sound hopeful.
Read more about experimental therapies for CAD
This is my long-winded attempt to explain that sometimes these symptoms I experience are just too much and I want a viable option. However, because I typically teeter in the 10-range, it is not usually suggested to do anything but wait until my HGB drops, stays there, and then treatment would be sought. And this is where I sit, in waiting, hoping I will not go in that direction. It is a frustrating holding pattern.
Even though I am still in the “safe zone” I still experience CAD symptoms. These I just must deal with and, as I discussed, avoid things that exasperate it. This is the reason it is necessary to have a team around me to make sure that I am monitored. Sometimes things occur internally that will not be attributed to CAD because we are not aware that they are associated.
I have armed myself with a cardiologist, vascular doctor, and gastroenterologist, aside from my hematologist. These are the specialists that I have chosen, as my symptoms have so far fallen within their expertise.
The cardiologist is because of the rapid heartbeat I often experience and most recently without hemolysis. I find this perplexing. My cardiologist assured me that my heart is functioning properly, yet I get this pounding without explanation. However, heart problems can develop from this disease. I did have COVID last year, so it could be a side effect and it has been reported as such, but right now there just is not enough solid information on long-term effects.
My vascular doctor is someone I sought out right before my diagnosis as I kept having this thick feeling in my veins, which I now know was from CAD, and blood clumping is an issue. However, so are blood clots, so it is important for me to stay on that and keep being monitored.
In a couple of weeks, I will be seeing a gastroenterologist for these unexplained stomach issues that come and go.
This is my current path, sitting back and keeping a watchful eye to make sure nothing gets past us. CAD causes so many different symptoms and at varying degrees, therefore it is important to know your body, know when some things changed, and have specialists to report it to.